How long can I wait until treatment?

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MichGuy
Regular Member


Date Joined Jan 2009
Total Posts : 51
   Posted 1/10/2009 11:44 AM (GMT -7)   
Hi Everyone. I am glad I found this forum. I have been diagnosed with prostate cancer and have been lurking for a few weeks. You all have been been informative. I think this is a very valuable setting, particularly to a newbie like me.

My stats are in my signature below. I'm struggling with the question of what to do now. I have pretty much ruled out radiation because my urologist informed me that the recurrance rate, down the line, is higher than with surgery. Of course, he's a robotic surgeon who has performed about 2500 open prostatectomies and about 300 robotic surgeries. I consulted with a radiation oncologist and he painted a beautiful picture of a full cure with practically no side effects. His story was too good to be true and contradicted what I have read elsewhere. My prostate size rules out everything except surgery and external beam radiation.

I have decided surgery is probably the best course of action for me, but I want to be sure I have the right surgeon. My prostate, at 96 cc, is really large and my urologist tells me this is a complicating factor in doing the surgery and in urinary and potency outcomes. Also, I had a right side laporscopic inguinal hernia repair in 2006 which is also a complicating factor. I really would like to interview 2 additional surgeons (besides my urologist who operates at St. Joseph Mercy Hospital in Ann Arbor, MI), one at the Henry Ford Vattikuti Institute in Detroit and one at the University of Michigan Health System. My problem is there is a huge lead time in scheduling an appointment. My biopsy was on Nov. 7. My urologist, at this point, could not perform the surgery until sometime in March. My appointment at Henry Ford is in late February which would translate into a surgery probably not until April atthe earliest. I imagine the lead times at U of M are similar.

My real question is, can I wait that long to carefully interview additional surgeons, or should I quickly schedule a March surgery with my existing urologist to lessen the chance of metastatic issues? My urologist says I do have considerable time since my cancer is so small and localized, however the Gleason 4 component worries me. While my urologist is very experienced and well-respected, one thing does cause me concern. He stated that his statistics on bilateral nerve-sparing is at 60%, yet his positive margins are in the 10% to 15% range. Shouldn't his bilateral nerve-sparing be in the same range as his positive margins (why cut out nerves if there is no positive margin)? Does anyone have any opinions about this? Should I interview more surgeons or am I risking the cancer spreading by waiting too long? Thank you all so much!

MichGuy

______________________
Age: 59, 59 at DX
PSA: 1/20/00 7.9, 7/22/00 3.3, 10/25/01 4.9, 10/19/04 5.1, 9/26/07 5.98, 8/28/08 7.68, 9/23/08 7.36, 10/23/08 8.64, 12/18/08 6.39
Prostate size: 96cc
Biopsy: 11/7/08 Positive 2 of 15 cores, both in rt apex, composite tumor quantity 5% prostate involved, Gleason 7 (3+4), Gleason pattern 4 accounts for 15% of tumor

Post Edited (MichGuy) : 1/10/2009 11:55:48 AM (GMT-7)


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 1/10/2009 1:16 PM (GMT -7)   
Welcome to the forum MichGuy. Wish I could answer your questions however all I have is an opinion. I personally Gleason 7 is on the lower level of high which tells me it needs attention sooner than later. With your stats I would think surgery would be the best possible solution and save the radiation for down the road if the need arises. If you choose radiation now, it very well may be curative but you are kinda burning the boats in the harbor. You are working with two great hospitals and I am sure your uro is quiet competent. Based on what you wrote I say schedule the surgery and don't look back.
Thank goodness there are others much smarter than I so I will be following this thread close.

peace to you
Dale
My PSA at diagnosis was 16.3
age 46 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11
PSA July 24th, 2008 is 0.04
PSA Dec 16th, 2008 is .06
Testosterone keeps rising, the current number is 156, up from 57 in May
cancer in 4 of 6 cores
92%
80%
37%
28%
 


Frank1205
Regular Member


Date Joined Feb 2008
Total Posts : 308
   Posted 1/10/2009 2:03 PM (GMT -7)   

Mich Guy,

I thought the positive margins national statistics were around 12%.  That seems to be right where you Doc is.  As far as surgery being better than radiation I have never really been convinced or heard that.  In my wisdom, as limited as it is, choose surgery for I could do salvage radiation in case I needed it if I got bad margins.  Now with my bad margin I am glad I did.

Here's a tip for you....When you see or interview a Doc make sure you schedule a surgery date when you are there for the appointment.  I was told that is the thing to do.  Its not the Doc that takes so long its the availablility of the room he needs to do his work.  Cancel the surgery dates when you finally decide on the one you want.  I did it this way and had no issues. This was recomended to me by a very smart and kind Surgeon.

All the best,

Frank


Age 54
DRE normal , 2004 Biospy negative - 2008 Biopsy positive (01-08-08)
10 cores, 1 positive and at 1% of that one core
PSA @ surgery 6 
Bone and Ct scans negative
clinicaly Staged at T1C - Gleason 3+3 = 6
Robotic Da Vinci performed March 27th, 2008, University of Chicago.
Catheter out in 7 days normaly expected leakage
Post Pathology T2C, Gleason 7, (3+4) 10 % of both portions of prostate
Seminal vessels clear, fat tissue clear, single positve margin at apex measuring less than 1/2mm. 
PSA Six week < 0.1 4 month PSA <.05 6 month PSA<0.01,9 month<0.01
Watching PSA @ 3 months for 2 years,  will do salvage radiation if necessary.
Fair to Good results with Viagra,  side effects are bothersome at times. 
 


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 1/10/2009 2:24 PM (GMT -7)   
Hi Ya Mich Guy,

My best half had his surgery done at U of M by David Wood. We had choices and picked one at the U who has multiple center experience (Wayne State) with a special interest in prostate cancer. There are great surgeons at all 3 hospitals you have mentioned. Although prostate size may make the job more difficult no matter which procedure you choose, pick the surgeon who has a lot of experience and a line outside his door!!!
By looking at your numbers, waiting 3 months won't make any difference. Good luck to you.

Swim
 


Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 1/10/2009 2:44 PM (GMT -7)   
I agree with Livinadream. A bird in the hand is worth two in the bush -- you have an experienced surgeon who is ready to schedule in March. What do you gain by interviewing more surgeons? Will you be swayed by better salesmanship and bigger lies about their statistics?

And it seems your uro, being experienced in both types of surgery, could switch from robotic to open if the need arises. Not all robotic surgeons can do this -- so there's a plus factor for your current uro.

As far as the margins are concerned, the surgeon doesn't necessarily know at the time of the surgery if the margins are positive. It's only the pathologist with a microscope who can really tell and even then he/she might miss something. Taking wide margins, including the nerves, is a precautionary measure taken for more aggressive cancers.

Your PSA shows a history of a slow but steady rise over time, and your biopsy indicates only a small amount of not-so-aggressive cancer so I don't think a further three months delay poses an undue risk of spreading. But a small risk nonetheless. If you take a gamble like this, better be sure there is a significant advantage in delaying.

In your situation I would run with your current uro.
Age 63. Other than cancer, in good health; BMI 20
Pre-op: No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores
7 March 2008, RRP, non nerve sparing
Two nights in hospital; catheter and staples out after 7 days
Continent, no pads needed from the get-go
Post Op: Stage pT2 M- N-; clear margins and lymph nodes; Gleason 4+4=8; prostate weight: 37gm
6-week and 7-month PSAs: 0
Bimix injections working well 


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 1/10/2009 3:31 PM (GMT -7)   
Hi Mich,

We're familiar with all 3 facilities you mention. Probably me more than Paul. Paul was treated at St. Joes for TCa but went to U of M for PCa. We know several urologists. Both being Medics, we know a whole lot of Docs all over the Motown area but our experience with urologists is personal, not professional. Feel free to e-mail Paul (or me). We can at least be some neighborly support.

Swim
 


MichGuy
Regular Member


Date Joined Jan 2009
Total Posts : 51
   Posted 1/10/2009 5:45 PM (GMT -7)   
Hello Everyone,

Thank you all for your considerate responses. This is a wonderful forum for someone like me who is still in shell shock (does that ever go away?) and needs to hear from others who have been through this. Dale, Frank, Swim, Piano...you have helped me in sorting out my thinking.

Frank, your scheduling suggestion was a good one. I wondered whether something like that was possible or whether insurance companies, doctors, etc, would frown on scheduling surgery while still obtaining additional medical opinions. Has anyone else done that?

Regarding several comments about what do I gain by waiting and interviewing further, one item, that of surgical technique, comes to the forefront with me. For example, the Vattikuti Institute, in addition to somewhat better outcomes than my uro, also hype a technique of nerve-sparing called "veil of aphrodite". I don't know if that's worth anything at all, just a lot of unsubstantiated marketing or, perhaps, even dangerous. My understanding of it is that, in addition to the 2 main nerve bundles, there are also very minute nerves on the surface of the prostate which can be spared by a very careful surgical technique. My uro thinks that perhaps what they are doing is actually leaving part of the prostate capsule in place during surgery and not removing it thus risking a subsequent rising PSA. I wonder if anyone can shed light into that technique and is it worth delaying surgery until I interview them to up my odds with regard to potency.

And Swim, thank you for offering an additional line of communication to share your knowledge of our local area. I will take you up on that and email you.

Again, thanks to you all.

MichGuy
Age: 59, 59 at DX
PSA: 1/20/00 7.9, 7/22/00 3.3, 10/25/01 4.9, 10/19/04 5.1, 9/26/07 5.98, 8/28/08 7.68, 9/23/08 7.36, 10/23/08 8.64, 12/18/08 6.39
Prostate size: 96cc
Biopsy: 11/7/08 Positive 2 of 15 cores, both in rt apex, composite tumor quantity 5% prostate involved, Gleason 3+4, Gleason pattern 4 accounts for 15% of tumor


DJBearGuy
Veteran Member


Date Joined Dec 2008
Total Posts : 688
   Posted 1/10/2009 6:06 PM (GMT -7)   
MichGuy,

Thanks for joining our group that no one wants to join!

Armed with the search term "veil of aphrodite", I stumbled upon a fascinating website: www.njurology.com
This is a blog where surgeons (apparently mostly from New Jersey) discuss medical issues. Regarding veil of aphrodite, here are some snippets:

-----------------------
Several things struck me about [Menon's] presentation. First was the low rate of potency among the patients getting a VIP which I thought Menon had been promoting as already superior to a standard open prostatectomy. A 17% potency rate is nothing to brag about. Second was that, after describing how the patients were randomized to the two groups, he went on to say that he felt uncomfortable putting patients with higher risk disease by pre-op parameters in the veil group because of concern about getting a positive margin. So he put those in the "classical" group. Unless I misunderstood, that decision made this no longer a randomized controlled study. Third was that, while he has identified nerves on the surface of the prostate, no one knows where they are going or what they are innervate.

Posted by Dale Russell M.D. on February 5, 2006 6:05 PM

-----------------------
full text at http://www.njurology.com/RoboticSurgeryBlog/2006/02/ed_and_the_veil_of_aphrodite.php

-----------------------
I often save the veil of aphrodite, but I am not sure that it helps much either in terms of nerve preservation.

I am not sure if the nerve fibers that are seen high on the prostate are going to the penis. I am also concerned about getting too close to the prostate in this area. I think the more important factor that helps restore erections is to leave the prostatic fascia over the neuro-vascular bundles. This leads to less stretch and trauma to the nerves. This intrafascial plane likely leads to the best nerve sparing.

Posted by Domenico Savatta, M.D. on June 11, 2007 9:12 PM
-----------------------
full text at http://www.njurology.com/RoboticSurgeryBlog/2007/06/veil_of_aphrodite_at_the_time.php


Dr. Menon is known by some of the board members here, and he seems to be highly respected. I'm sure some other folks will chime in.

DJ
DJ

Age 53
PSA 2007 about 2
PSA 2008 4.3
Diagnosed September 2008.
Biopsy: 6 of 12 cores positive
Gleason 4+3 = 7
CT and Bone scan negative
Da Vinci surgery at City of Hope December 8, 2008
Radical prostatectomy and lymph node dissection
Catheter removed on 7th day, replaced on 8th day, removed again 14th day following negative cystogram
pT2c
lymph nodes negative
microscopic margins
next PSA 1/22/08


Frank1205
Regular Member


Date Joined Feb 2008
Total Posts : 308
   Posted 1/10/2009 11:14 PM (GMT -7)   
Mich,

I had no problem with my insurance for there is no claim made to it just for the scheduling. I am sure you will need to make a decision before typical pre-surgery notiifcations are required.

Take care,

Frank
Age 54
DRE normal , 2004 Biospy negative - 2008 Biopsy positive (01-08-08)
10 cores, 1 positive and at 1% of that one core
PSA @ surgery 6 
Bone and Ct scans negative
clinicaly Staged at T1C - Gleason 3+3 = 6
Robotic Da Vinci performed March 27th, 2008, University of Chicago.
Catheter out in 7 days normaly expected leakage
Post Pathology T2C, Gleason 7, (3+4) 10 % of both portions of prostate
Seminal vessels clear, fat tissue clear, single positve margin at apex measuring less than 1/2mm. 
PSA Six week < 0.1 4 month PSA <.05 6 month PSA<0.01,9 month<0.01
Watching PSA @ 3 months for 2 years,  will do salvage radiation if necessary.
Fair to Good results with Viagra,  side effects are bothersome at times. 
 


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4814
   Posted 1/11/2009 4:22 AM (GMT -7)   
I waited almost a Year before I had surgery. I did it in part to have better results with my insurance due to a very large deductable.

Doc found modules and a psa of 1.3 in July 20007.
Second psa in Jan 2008 still 1.3
Biopsy in March 2008
Surgery in June.


Age 53   - 5'11"   205lbs
Overall Heath Condition - Good
PSA - July 2007 & Jan 2008 -> 1.3
Gleason - 6
(biopsy done March 4, 2008-> 2 of 12)
 
06/25/08 - Da Vinci robotic laparoscopy
10/03/08 - 1st Quarter PSA -> less then .01
 

Surgeon - Keith A. Waguespack, M.D.

Las Colinas and Plano Offices

 


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4017
   Posted 1/11/2009 7:05 AM (GMT -7)   

Dear Mich:

Obviously, you have some remaining doubts about your choice, so I would encourage you to go ahead and seek other medical opinions.  This is a HUGE decision and you want peace of mind about your decision.

While I was making up my mind I scheduled both surgery and seeds, then cancelled the surgery when I decided on the seeds.  I had no insurance issue even though they got a bit confused during the pre-qualifying stage....I just explained what I was doing and they were fine with it.  I suggest you go ahead and schedule the March surgery...then you can cancel later if you choose another doc.

Tudpock


Age 62
Gleason 4 +3 = 7
T1C
PSA 4.2
2 of 16 cores cancerous
27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 12/30/08.


MichGuy
Regular Member


Date Joined Jan 2009
Total Posts : 51
   Posted 1/11/2009 9:46 AM (GMT -7)   
Thanks to everyone for your valuable input. DJ, I appreciated the Veil of Aphrodite links. I believe now, based on Tudpock, Frank and Steve's suggestions, that I will proceed to schedule a March surgery with my existing uro, but keep the interview process going until then. And thanks to Swimom for the off-line input!

MichGuy

______________________
Age: 59, 59 at DX
PSA: 1/20/00 7.9, 7/22/00 3.3, 10/25/01 4.9, 10/19/04 5.1, 9/26/07 5.98, 8/28/08 7.68, 9/23/08 7.36, 10/23/08 8.64, 12/18/08 6.39
Prostate size: 96cc
Biopsy: 11/7/08 Positive 2 of 15 cores, both in rt apex, composite tumor quantity 5% prostate involved, Gleason 7 (3+4), Gleason pattern 4 accounts for 15% of tumor
Age: 59, 59 at DX
PSA: 1/20/00 7.9, 7/22/00 3.3, 10/25/01 4.9, 10/19/04 5.1, 9/26/07 5.98, 8/28/08 7.68, 9/23/08 7.36, 10/23/08 8.64, 12/18/08 6.39
Prostate size: 96cc
Biopsy: 11/7/08 Positive 2 of 15 cores, both in rt apex, composite tumor quantity 5% prostate involved, Gleason 3+4, Gleason pattern 4 accounts for 15% of tumor

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